Uncertainty is really difficult. It’s been my experience that most people can handle just about anything if they clearly understand the context of the situation. At a parent and caregiver to a child with significant disabilities, I’ve learned to embrace and even see the value not knowing what’s coming next. Koan, my youngest son, has global developmental delays. He is nine years old and doesn’t walk, talk, or feed himself. No doctor or specialist has been able to tell us why this happened. He is who he is. We named him for the answerless riddles or parables that Zen monks meditate upon to reach enlightenment. We gave him this name before he was born and long before we knew he would face these types of challenges. It is, of course, a very fitting. With Koan in my life, I’ve learned to be more present in the moment. He’s helped me understand the pointlessness of worrying about things I can’t control. This is a really valuable gift.
Over first nine years of his life, Koan and indeed our whole family, has been really well served by various support systems put in place to serve people with disabilities. Child Find got to us right away and put us on the right path. They helped us signed up for the most fitting Iowa Medicaid Waiver and got us access to all different types of programs and service providers. With very little effort we’ve received so many supports for Koan: specialty neurology care, mobility appliances, a feeding chair, respite care, just to name a few. The system worked for us.
To be completely honest, because things were worked so well, I didn’t really spend any time, thought, or resources to support the organizations or the officials that had laid the groundwork for these high-quality systems. I took these services and supports for granted, and that was a mistake. The context has changed a lot in the last two or three years. I now realize that many of the systems and supports my family relies upon now (and will for years to come) are in very real jeopardy.
The efforts to repeal and replace the ACA or Obamacare got my attention last spring and really started my efforts in disabilities advocacy. Even though I had no idea what to do or where to start, I knew I had to do something. While I’m sure that I’m making a lot of rookie mistakes, I’ve also discovered that my voice has real power. And, since Koan has no voice in our political system, it’s my responsibility to speak for him.
I have largely been focusing my advocacy efforts on educating legislators and policymakers on what the changes to the ACA will mean for people with disabilities. My primary method has been to tell Koan’s story and let them know what we stand to lose. While it’s difficult to say with certainty what the exact impacts would be if the proposed Medicaid cuts went through, it is safe to say that many services that are essential to my family would be significantly degraded or removed. For example, it’s possible that disabled people in Iowa would lose access to “Optional Medicaid” services such as prescription drug coverage, therapy (physical, occupational, speech), mobility/prosthetics, and community and home-based services like respite care just to name a few. Of course, the loss of these types of services would be a disaster for individuals with disabilities, caregivers, and families who support disabled people. This is both ethically and morally reprehensible.
Uncertainty is really difficult. And, while it is pointless to worry about things that are beyond our control, policy is something all of us can work to change. I am striving to become a strong advocate for disabled people and caregivers. While I often don’t know what I don’t know about how to be a good advocate, I’ve come to realize that I do have power to effect change. I would encourage all parents, caregivers, and disabled people to take the same journey toward advocacy and empowerment that I’ve started this year. Our voices to matter, and together we can make a difference.